Back to Work Already??

I am back to work already, I know 4 days post op.  On November 23, 2015, 7:00am, Kinsey picked Lucas and myself up for Phase I of my three part journey. While driving down to Everett, I was thinking to myself how LUCKY I am.  I am LUCKY that I have the option to have this surgery (nipple sparing), I am LUCKY to have the opportunity to kick cancer’s butt before it has the chance to enter my life, I am LUCKY to have a husband that loves me no matter what (boobs or no boobs), I am LUCKY to have amazing family that will do anything for me, I am LUCKY to have supporting loving friends that are cheering me on, I am LUCKY to have such a great medical staff working on me (Dr. Soriano and Dr. Scott), I am LUCKY to have primary care provider (Dr. Fackenthall) that is cheering me on and telling me that she would do the exact same thing if she were in my shoes and tells me she loves me.  Not everyone has this sort of “LUCK“.lucky charm

Some have said, “Geez Rachel, you are one un-lucky girl. You have had the worst luck medically, you have had multiple back surgeries, you have celiac disease and have had pre-cancerous colon polyps and now you have this mutation.”  What I tell those people is, “I am LUCKY. I have so much to be thankful for and I say I am LUCKY because I have the opportunity to beat cancer before it has the chance to get the upper hand on me and my family.”  I am not saying that I am happy that I have CHEK2 but I am happy that I have the knowledge of knowing and being given the choice to take this journey, I am not being forced into this journey.screw-and-ribbon-sketch

By 8:45am, my IV was started and I had the revolving door of support coming in and out of pre-op. First it was Katie, she was in there making me giggle like we do when we are together. She was there with me even though she was flying out to Texas for work later that morning. Then there was Kinsey, she picked me up after working all night as a 911 dispatcher and told me she was staying until I got out (I told her to go and home and take care of herself) and then of course my mama. My mama knows me  better than anyone, she said while the happy drugs start going into my IV, “here comes the mouthy, unfiltered Rachel we have all been waiting for.”

Once Dr. Soriano came in and said hi to me, everything went really fast. Before I know it I was on the operating table being told to  breathe in the “oxygen”.  I called bullshit on “oxygen” because you know they slipped a Mickie in the gasline I was breathing and the IV fluids they were giving me.

I remember waking up saying, “I really want an icepack for my boobs because they are on fire, but I bet he will say no because it will constrict the blood flow to the nipples.” I was right…he said no. (I guess at least I was thinking logically and somewhat clearly.)  Before I knew it, I was home on the couch and my boys were home giving me hugs and happy to know that I was okay.

I slept a lot Friday and the rest of the weekend seemed pretty normal for the most part except I was not as busy as usual.

Monday 11/16/15, 8:30am, I clocked in at work. The amounts of looks and questions of why I was at work were crazy. “Why are you here? Are you okay? Are you in a lot of pain?”  My answers were yes I am back. I am back because I have a job to do, a job I love to do, patients and co-workers I love to see everyday and I am fully capable of doing my job. I have a little amount of discomfort and a small amount of itchiness from the healing process but surviving.   If I can work and still kick ass at my job then I will be in the office. The next surgery (bilateral mastectomy with tissue expander placement) is going to be the painful surgery and I will be off of work for three weeks starting December 4-December 28.

So far the incisions are healing amazing.  I knew Dr. Soriano has magic surgeon hands, but seriously, he is pretty awesome. I am so impressed. I am really going to be impressed with the final project. I meet with Dr. Scott, Plastic Surgeon, on November 23rd, to go over the plan again. Surgery is scheduled for December 4, 2015 (I have to be at the hospital at 5:30am, barf, I hate getting up so early but at least I won’t starve to death while waiting.) Lucky_life_watercolor_calligraphy1

In conclusion, I AM LUCKY for so many reasons. It is hard to not let the negative run your life, but you really have to look at the things in your life that are good, that are LUCKY.  Someone may take this gene mutation as shit luck but I am taking it as a positive thing, I am LUCKY I know this information and can do something about it for not only my own health but for my family.

Until the next time…

-R-

 

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Reconstruction or Cosmetic??

Is it reconstruction or cosmetic surgery? That is the question of the hour…

Of course there are opinions around ANYTHING now a days. I have heard from many different generations of people, men, women, women currently fighting breast cancer, women that have fought breast cancer and future breast cancer survivors.  I have gotten comments, “why would you mutilate your body if you DON’T have cancer yet, or “why don’t you just wait until you have cancer” or “you are just doing this to get a new set of boobs” or “why would you keep your nipples that raises the risk of getting breast cancer” or “best of all on my FMLA paperwork for Jason, the reason for surgery stated “cosmetic”.

I kinda flipped my shit on that explanation of surgery.  Cosmetic surgery, really? I am pretty sure that this is reconstruction.  I am not having silicone implants put in behind my own breasts, I am having breast built and reconstructed so I look good under clothes.  They are not going to be perfect, as my breasts now are not perfect but at least I will have breasts.  My most favorite quote is “remember ladies, they are sisters not twins, they will not look the same just as your natural breasts don’t look identical.”  The new sisters will not be placed for about 6 months, so by summer I should have my final set in place, until then I will have tissue expanders in place which are half blown up balloons that have a port area where the plastic surgeons office can do “fills”.  These fills will start happening 2-3 weeks after the tissue expanders are placed and will occur 1-2x a week or as much as my tissue can handle.  Once my tissues are expanded to the size of preference for my new set, I will have a surgery to exchange the expanders to silicone implants.

To answer the above questions, I would prefer to NOT get cancer if I can avoid it. I am not at zero risk but I am definitely reducing my risk greatly.  Second, keeping my own nipples when I don’t have a cancer diagnosis only increases my risk by 1%.  That is why I am getting this nipple delay surgery, Dr. Soriano will take biopsies right under the nipple so they can make sure there is nothing hiding right underneath. Third, I am not mutilating my body, I am saving my body. I am saving myself from having to become a survivor, I am going to be a previvor. I am saving my boys from watching me go through cancer treatments.

What a tissue expander looks like...
What a tissue expander looks like…

There are controversies over circumcision of baby boys. Some decide to do it and some don’t.  It is the individual choice of the person.  I don’t judge and support whatever people want to do.  To everybody’s surprise I CAN keep my mouth shut and keep my opinion to myself.  There are very few things that I am very passionate about: My kids: Don’t mess with them and accept them for who they are, if you can’t do that, you don’t need to be around them.  Two: Genetics, if you have a family history of cancers, even if it is not breast cancer but a different kind of cancer, get tested.  There is a whole formula to genetics and your family history, it is a very in depth family tree called a pedigree.  The pedigree is your family and their cancer history.  The formula spits out if you are at high risk of having a genetic mutation.  If you do, you will be counseled and the test will be completed.  If you don’t want to know that is your choice for yourself but what about your offspring, your kids, your grandkids, it is their future too, not just yours.  Just a thought…

Tomorrow is the start, my nerves are rearing their ugly heads but its okay. I got this and the support is amazing. Thank you for all the messages, prayers, and thoughts.  Sorry in advance to Kinsey, Katie and my mom and the nursing staff at Providence tomorrow. I know I get a bit chatty and lippy with high anxiety and of course drugs.  I will post when able…until then…

previvor-L-

Rachel

Support system

I am seriously blown away with the amount of support that I have been flooded with.  I knew I was lucky but didn’t know how lucky I actually was until I started seeing all of the kind messages and words from so many people.

I have found it very difficult to explain my decision to people that are either not in the medical field or have never had someone close to them go through cancer treatment or pass away from the damn disease.  To me it was an easy decision.  I have been asked by a couple people, “why don’t you just wait? You may not get cancer, you don’t know, so why remove your breasts if you really don’t know?”  My response to those people was, “I don’t feel like waiting for cancer to win the game and having upper hand on me and my family. I am going to beat breast cancer  before it is even close to winning.”

mom and me
My amazing mom and I at the Cocoon House Auction/Fundraiser.

I am given the opportunity every day to tell my story, to educate patients and family on the importance of genetic testing.  If you don’t know that you have a genetic mutation, you can’t prevent it.  The support I am getting from all sides of my life.  I have the most amazing family. My mom won’t leave my side, I love having her by my side because I don’t even have to say what I need or want she just knows. That is what mamas are for right? I am lucky to be able to call my mom my “breast friend” she knows exactly what I am going through and knows it is not easy but it is the best decision especially with our family history.

jason and i
My handsome husband and I on the beach, where we met 7 1/2 years ago.

My amazing husband Jason, will be there for me and the boys. I am wanting the boys’ routines undisturbed, as much as possible. I don’t know what I would do without him, I am so lucky to have such a supportive loving husband, he doesn’t care that I won’t have my original breasts, he just wants me healthy and alive. Not all women have that support.

My dad will be there to make me laugh and help with post op appointments and with the boys. My sister in law Bobbi Jo will help with the boys as well. (You can tell I am more worried about my boys than myself.) Helping with the boys is a HUGE help!

My best friend Katie, I don’t know if I have words to explain this woman. ( A little background on our friendship), I started working at my current job September 2014 and we became instant friends.  She was pregnant and I use to work OB.  The second week I was at my new position I had to take her into triage because the baby was not moving. (By the way Austin is almost one so he was okay.) Ever since that day, there has not been a day that goes by that we don’t  talk. She has been my support through this journey. She is the first one I called when I got  the diagnosis of CHEK2. She said I will be with you the whole time through this whole process. She is just amazing…Love you Katie!  She will listen to me complain, cry, laugh and joke about anything and everything.  I sure couldn’t do this without her. She is going to be there holding my hand before the surgeries. She set up a Meal train after my mastectomy so my boys don’t starve and I get some good meals so I have quicker healing. She is my Thelma and I am her Louise, I feel so lucky to be running amuck with her in this crazy thing we call life.

Katie and I in NYC in September. My first time to the city and I wouldn't have wanted to do it with anyone else.
Katie and I in NYC in September. My first time to the city and I wouldn’t have wanted to do it with anyone else.

My other bestie Kinsey. Another person I am not sure I have words to explain. Kinsey is one of the strongest women I have ever met. She has been given a complicated hand of cards in life and she is WINNING!  She works night shift as a 911 dispatcher and is getting off of work and taking me to my surgery.  She has ALWAYS loved me for me, even at my worst.  She listens and always agrees with me even when I am wrong but then gives sounds advice and brings me down to reality.

Kinsey and I at her daughters rollerskating party in March.
Kinsey and I at her daughters rollerskating party in March.

I feel like I have won the lottery in the friend and family department. I am going to get through this and have amazing people by my side. These boys are my life and I would do anything for them, protect them and make sure nothing bad happens to them. Hunter Edwin and Lucas Edward, I love you boys to the moon and back.

True love, my boys
True love, my boys

Thank you so much for everyone reading this post, thinking about me in your thoughts and prayers. I really do appreciate it more than you will ever know.  Much love!!!

Rachel

Multiple appointments

A few weeks after finding out I was positive for CHEK2, I decided that I should not only make appointments to consult regarding breast surgery but also look into my colon cancer risk.  I phoned my Gastroenterologist, Dr. Stephen Rulyak at the Polyclinic.  I asked if there was any chance I would be able to make a procedure appointment for a colonoscopy to clear my mind of any “issues”.

I was diagnosed 7 years ago with Celiac Disease, an autoimmune disease that attacks itself when gluten is digested. This autoimmune disease is really not a bad one to have, you just adjust your diet to be gluten free and you live a very normal life.  When I was in the procedure room, Dr. Rulyak looked up CHEK2, as he had never heard of it, and said, “this is good for your mental health but you are so young Rachel, it will be a clean colonoscopy.”

When I woke up from my colonoscopy Dr. Rulyak said, “Well Rachel, I am so happy that you had this colonoscopy because you did have 3 pre-cancerous polyps, (colon polyps take 10 years to change from a polyp (benign growth) to cancer).”  All I wanted to say was, “Yes, I’m not crazy for doing this at 32 years old.”  On the way home from Seattle all I could talk to my husband, Jason, about was the what if’s, what if I didn’t do this, I would have had colon cancer by age 40.  The polyps were fully removed and I think Dr. Rulyak “believes” that this gene thing is real!

It confirmed once again in my head that I needed to have my breasts removed. I made an appointment with Dr. Jeff Scott to have a consult regarding my options for reconstruction in March 2015.  He went through the options with me.  DIEP ( type of breast reconstruction in which blood vessels called deep inferior epigastric perforators (DIEP), as well as the skin and fat connected to them, are removed from the lower abdomen and transferred to the chest to reconstruct a breast after mastectomy without the sacrifice of any of the abdominal muscles.) (Wikipedia.com)  Or a bilateral mastectomy with immediate reconstruction, which is a three part process. In passing he asked if I had thought about doing nipple sparing? I ALWAYS thought women were crazy for keeping their nipples. My biggest concern about having breast surgery is the scarring. I have history of hypertrophic scars, (Hypertrophic scars are red and thick and may be itchy or painful).  After tons of research, I decided that is what I wanted to do but would still be okay if I had to lose them and the person to decide if I was a candidate for the nipple sparing was Dr. Perry Soriano. So I scheduled an appointment with him for October 2015.

So a little background of myself, I was Dr. Soriano’s Medical Assistant for almost 2 years.  I have always told myself if I ever needed the services of a surgical oncologist, he would be my guy. He is the most caring, compassionate, courageous person I have ever met. I have never seen a human being tell another human being that they have a horrible prognosis and they are going to die from the disease that they are fighting. He not only has that compassionate side to him but he is also a kick ass surgeon that takes his job seriously and wants the BEST outcome for all of his patients.

About a month ago in October, I had my appointment with him.  He walked in and gave me that look, “I am sorry you are here” look.  I said, “Dr. Soriano, I am here by choice, I am not here because I have to be like most of your patients, you know patients that have cancer.” He smiled!  I couldn’t help but blurt out, “I want a nipple sparing, am I a candidate?” He giggled and said, “well let’s do an exam and see.” Of course I was and he explained the three step process of Nipple and skin sparing bilateral mastectomy with immediate reconstruction with tissue expanders, PHEW that is a long ass procedure name.

Step 1-“Nipple delay procedure-“The surgeon will make an incision in your skin at the point where your mastectomy scar will be located. This may be under your areola or in the crease beneath your breast. About half of your breast skin will be lifted off of the fatty and glandular parts of your breast; this will disconnect the blood vessels that normally provide circulation to your nipple, and encourages new vessels to connect from breast skin to your nipple-areola complex, keeping it alive. Your surgeon will also take a biopsy of tissue from under your NAC and send it to the pathology lab.” (abouthealth.com) which is scheduled for November 12, 2015.

Step 2-Skin sparing bilateral mastectomy with immediate tissue expanders- tissue expanders are put in place of your breast at the time of breast cancer surgery, depending on the circumstances. This is known as “immediate” reconstruction. “Delayed” reconstruction refers to placement of the expander at a separate operation after mastectomy. If you have chosen to proceed with implant-based reconstruction, then the tissue expander is expanded in the office at one or two week intervals. This is followed by a period of 1-2 months of healing. (jeffscott.com)

Step 3-Tissue expander removal and implant placement- tissue expander will  be removed and replaced with your selected breast implant, which might be saline or silicone, depending on your discussion with Dr. Scott and your preferences. At the same time, if desired, a matching procedure can be done by Dr. Scott with the other breast. This overall process typically takes 3-6 months, but can sometimes take longer or shorter, depending on your circumstances. (jeffscott.com)

Example of the process of tissue expanders.
Example of the process of tissue expanders.

So Thursday is coming soon….more tomorrow

-L-

Rachel

The journey begins…

On a warm July day in 2014, I was sitting in the park with one of my best friends Malia, watching our kids play.  While catching up with Malia, I received a phone call from my mom asking me if I had a few minutes to talk.  Whenever my mom asks if I “have a few minutes to talk” that means she needs to talk about something serious.  Of course I said yes.  She proceeded to tell me that she was just leaving a genetic counseling appointment and had some news. ( I was quite shocked because she never even told me she was going to see a genetic counselor.)  She said, “I was tested about 3 weeks ago for a test called “My Risk”, which is a genetic panel that analyzes your blood for 23 different gene mutations or variances that can increase your risk for certain cancers/diseases.  I tested positive for a mutation called CHEK2 which makes me at a high risk to develop breast cancer (50%) and moderate risk to develop colon cancer (25%). I have appointments made with Dr. Steve Martinez (breast surgeon) and Dr. Jeff Scott (Plastic surgeon) in a few weeks to discuss my options but am 99% sure I am going to have a prophylactic bilateral mastectomy with reconstruction.”

The CHEK2*1100del mutation is most commonly seen in individuals of Eastern and Northern European descent. Within these populations the CHEK2*1100delC mutation is seen in 1 out of 100 to 1 out of 200 individuals. However, in North America the frequency drops to 1 out of 333 to 1 out of 500. The mutation is virtually absent in Spain and India.[6] Studies show that a CHEK2 1100delC corresponds to a two-fold increased risk of breast cancer and a 10-fold increased risk of breast cancer in males.

At this point, I am on my phone googling this gene and deciding if I was going to get tested.  I had so many crazy emotions going through my brain all at once.  The what if thoughts were driving me crazy.  I never want to see any of my family go through cancer treatment especially my mom.  My mom is my best friend, my rock, my mentor, my cheerleader, my boys’ nana and the most amazing person in the world.  So I cheered her on and went to all the appointments she would allow me to go to.

On October 24, 2014, my mom underwent a bilateral mastectomy with DIEP reconstruction.  I think that it was the longest 9.5 hours that I have ever experienced.  I was that annoying family member in the waiting room bugging the nurses asking if they were almost done or if everything was okay with her.  Dr. Scott and Dr. Edwards took their time and did everything perfect, (that is what was taking so long).  I stayed the night with her the first night because I didn’t want to leave her side. it was a long recovery but she sailed through the recovery without any major complications.

In November 2014, (I had just started a new job in Clinical Research at Providence in September 2014, I had to wait for my insurance to kick in) I was tested for the CHEK2 gene that my mom had tested positive for back in July 2014.  I was playing mind games with myself, telling myself that I was negative.  My mom and I walked into Joy’s office with our peppermint mochas and Joy looked at me and said “you are positive for the gene Rachel.”  I instantly started to cry.  I wasn’t crying for myself, I was crying because I know being a mom you have guilt (even if its not your fault) and for my boys (I was worried about my husband, Jason and my boys Hunter (10) and Lucas (4), having to see me go through surgery.  I knew that I could handle surgery and the short term pain but I was just shocked that I was positive, even though I had a 50/50 chance of being positive since my mom was positive.

I called my best friend Katie (who was on maternity leave from work) and my cousin Kelsey, who has always been so  supportive of anything and everything I do.  I was just in awe of being told I was positive for CHEK2.  I drove home in silence and just thought to myself that I am going to make appointments in the morning to figure out my options.  I knew that I wanted to reduce my risk of getting breast cancer and that is the beginning of my journey…

-L- Rachel